Table 1.
Patient background characteristics.
| Characteristic | Full sample (N=12,502) | Self-completed sample (n=6919) | Proxy-completed sample (n=5583) | P value | |
| Gender, n (%) |
|
|
|
<.001 | |
|
|
Male | 6653 (53.2) | 3224 (46.6) | 3429 (61.4) |
|
|
|
Female | 5849 (46.7) | 3695 (53.4) | 2154 (38.6) |
|
| Age (years), n (%) |
|
|
|
<.001 | |
|
|
≤10 | 2020 (16.2) | 4 (0.1) | 2016 (36.3) |
|
|
|
11-20 | 2111 (16.9) | 390 (5.6) | 1721 (31.0) |
|
|
|
21-30 | 2570 (20.6) | 2128 (30.8) | 442 (8.0) |
|
|
|
31-40 | 2728 (21.9) | 2367 (34.3) | 361 (6.5) |
|
|
|
41-50 | 1621 (13.0) | 1319 (19.1) | 302 (5.4) |
|
|
|
51-60 | 943 (7.6) | 543 (7.9) | 400 (7.2) |
|
|
|
≥61 | 469 (3.8) | 146 (2.3) | 313 (5.6) |
|
|
|
Missing | 40 (0.3) | 12 (0.1) | 28 (0.2) |
|
| Employment, n (%) |
|
|
|
<.001 | |
|
|
Active | 3578 (28.6) | 3019 (43.6) | 559 (10.0) |
|
|
|
Nonactive | 8924 (71.4) | 3900 (56.4) | 5024 (90.0) |
|
| Family registry, n (%) |
|
|
|
<.001 | |
|
|
Urban | 6488 (51.9) | 3783 (54.7) | 2705 (48.5) |
|
|
|
Rural | 5991 (48.0) | 3120 (45.1) | 2871 (51.4) |
|
|
|
Missing | 23 (0.1) | 7 (0.2) | 16 (0.3) |
|
| Family income per year (CNYa), n (%) |
|
|
|
<.001 | |
|
|
≤5000 | 705 (5.6) | 433 (6.3) | 272 (4.9) |
|
|
|
5001-10,000 | 782 (6.3) | 427 (6.2) | 355 (6.4) |
|
|
|
10,001-30,000 | 2584 (20.7) | 1367 (19.8) | 1217 (21.8) |
|
|
|
30,001-50,000 | 2923 (23.4) | 1459 (21.1) | 1464 (26.2) |
|
|
|
50,001-100,000 | 3228 (25.8) | 1823 (26.3) | 1405 (25.2) |
|
|
|
100,001-200,000 | 1554 (12.4) | 955 (13.8) | 599 (10.7) |
|
|
|
200,001-300,000 | 417 (3.3) | 263 (3.8) | 154 (2.8) |
|
|
|
300,001-500,000 | 196 (1.6) | 125 (1.8) | 71 (1.3) |
|
|
|
≥500,001 | 113 (0.9) | 67 (1.0) | 46 (0.8) |
|
| Duration of RDsb (years), n (%) |
|
|
|
<.001 | |
|
|
≤10 | 4709 (37.6) | 2681 (38.7) | 2028 (36.3) |
|
|
|
11-20 | 4909 (39.2) | 2214 (32.0) | 2695 (48.3) |
|
|
|
21-30 | 1545 (12.3) | 1145 (16.5) | 400 (7.2) |
|
|
|
31-40 | 696 (5.5) | 593 (8.6) | 1032 (18.5) |
|
|
|
≥41 | 302 (2.4) | 260 (3.8) | 42 (0.8) |
|
|
|
Missing | 341 (2.7) | 26 (0.4) | 315 (5.6) |
|
| Number of children, n (%) |
|
|
|
<.001 | |
|
|
0 | 7230 (57.8) | 2968 (42.9) | 4262 (76.3) |
|
|
|
1 | 3516 (28.1) | 2816 (40.7) | 700 (12.5) |
|
|
|
2 | 1438 (11.5) | 989 (14.3) | 449 (8.0) |
|
|
|
≥3 | 318 (2.5) | 146 (2.1) | 172 (3.1) |
|
| Using assistive devices in daily life (eg, wheelchair, ventilator, etc), n (%) |
|
|
|
<.001 | |
|
|
No | 7200 (57.6) | 4074 (58.9) | 3126 (58.9) |
|
|
|
Rarely | 1887 (15.1) | 1134 (16.4) | 753 (16.4) |
|
|
|
Sometimes | 1490 (11.9) | 852 (12.3) | 639 (11.4) |
|
|
|
Often | 950 (7.6) | 458 (6.6) | 492 (8.8) |
|
|
|
Always | 958 (7.7) | 396 (5.7) | 562 (10.1) |
|
| Disability (either physical or psychological), n (%) |
|
|
|
<.001 | |
|
|
Yes | 3551 (28.4) | 1880 (27.2) | 1671 (29.9) |
|
|
|
No | 8951 (71.6) | 5039 (72.8) | 3912 (71.1) |
|
| Number of family members living together, n (%) |
|
|
|
<.001 | |
|
|
0 | 480 (3.8) | 271 (3.9) | 209 (3.7) |
|
|
|
1 | 1855 (14.8) | 1140 (16.5) | 715 (12.8) |
|
|
|
2 | 3457 (27.6) | 1975 (28.5) | 1482 (26.5) |
|
|
|
3 | 2725 (21.7) | 1304 (18.8) | 1421 (25.5) |
|
|
|
≥4 | 3155 (25.2) | 1585 (22.9) | 1570 (28.1) |
|
|
|
Missing | 830 (6.6) | 644 (9.3) | 186 (3.3) |
|
| Perceived disease severity (score 1-10), mean (SD) | 8.2 (2.3) | 7.8 (2.3) | 8.7 (2.1) | <.001 | |
aA currency exchange rate of CNY 1=US $0.14 is applicable.
bRD: rare disease.